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Organ transplantation: opt out or lose out.

There are less than two months until the Welsh Assembly Government will have the power to remove the organs from a person’s body after death without informed consent if the person is an adult living in Wales. The next of kin and other loved ones will have no veto about the removal of those organs.

The Human Transplantation (Wales) Act 2013 will enable these actions against adults and against their dearest friends/relatives from December 1st 2015 using the fictitious phrase “presumed/deemed consent”.

Dr John Fabre, Emeritus Professor, King’s College, London and former President of the British Transplantation Society, wrote an incisive paper detailing the many flaws in using presumed consent for organ removal (Fabre, 2014). The paper is freely available at: http://www.clinmed.rcpjournal.org/content/14/6.toc

Drawing on John Fabre’s analyses, I have been thinking about the responses from deniers i.e. people who continue to support presumed/deemed consent thereby denying its fictitious nature and its conflicts with the central principles of the ethics of clinical practice.

Current progress: deniers would question whether the progress is sustainable?
The UK Organ Donation Taskforce’s recommendations in 2008 are continuing to be implemented leading to increases in donations (absolute numbers and donors per million population) across the UK. The strategy to maintain the increase in donations through informed consent should include improved organisational infrastructures in hospitals. A strategy which has been highly effective in Spain particularly the use of family liaison clinical staff.

Spain: some deniers would claim the organisational changes in 1989 “enabled” the presumed consent legislation to become effective (e.g. Rieu, 2010) but the legislation has not been implemented. There is no opt-out register, there is no publicity about opt-out legislation, carrying a donor card is not sufficient for organ removal after death, and a family member has to provide written consent for organ removal. It is hard to see how anyone could continue to claim Spain uses presumed consent.

Integrity in Wales: deniers will be hard pressed to dispute the facts presented by John Fabre and separately by Willis and Quigley (2014). There is particular egregiousness in the claim that Wales will have a soft opt out system when the Act and the Explanatory Memorandum reveal the barriers for the family and that “…families do not have a legal veto because the law will recognise the deemed consent of the deceased as having precedence.”

Presumed consent and the official position of the Welsh British Medical Association (BMA): how can the deniers justify weakening the principle of informed consent?
I am disappointed by their position and I stood in the election last year to the BMA’s Welsh Council on a platform that explicitly included my opposition to their position: http://www.iainrobbe.com/shock-election-result/

Other professional organisations have been more enlightened, for example, the UK Royal College of Surgeons and their Patient Liaison Group have taken a neutral position in 2013 as regards opting out having previously supported it. The College’s official response in 2012 to the Welsh Assembly’s White Paper on legislation for organ and tissue donation included the statement “…We are primarily concerned that the evidence base for the proposed move to a ‘soft opt-out’ is not sufficiently robust, and that the case for changing consent systems has yet to be made – donation rates in Wales are currently at a peak.”

In my opinion, some of my BMA colleagues could have been motivated by the utilitarian principle but some could have seen an opportunity for short term advantage that, alas, coincided with the Labour Assembly Government’s political aims which could be summarised as seeking to beat the English especially the UK Conservative Government. Only belatedly are the Wales BMA talking about both presumed consent and safeguards.

Randall and Downie (2012) drew attention to manipulative language in a separate, related situation and they could have been writing presciently about the Assembly Government’s and the BMA’s comments e.g. the tendentiousness of the “key message” and of the “ground breaking change” in this shameful Act.

About Iain Robbe

I am a medical practitioner (MB, BS, 1980; MRCS, LRCP, 1980) registered with the General Medical Council of the United Kingdom without a licence to practise. I am active as a Clinical Medical Educationist participating in a number of projects with the universities of Dalhousie in Nova Scotia and Mount Allison in New Brunswick, inter alia, and separately with three of the veterinary schools in the UK.
My focus is on teaching and research in professionalism, ethics, and communications, and particularly the influences of vernacular architecture on the creation of positive learning experiences in undergraduate and postgraduate medical education.
I have the degree of Master in Public Health from the University of London (1985) and the degree of Master in Medical Education with distinction from the University of Wales (2001).
The guiding principles in my practices are based on andragogy and humanism, and the prime ethical principle of autonomy for the individual and in population health.
December 8th 2017